Welcome to
Monoamniotic.Org, the web site for expectant and experienced parents of
monoamniotic twins! While the Introduction Letter gave you an introduction to
our group, it's my job to welcome you to our site and tell you a little more
about what monoamniotic twins (multiples) are. First of all, we're glad you
came. This group was formed by experienced and expectant parents reaching out
to each other to help support each other through the difficult times. We come
from all over the US, as well as abroad (Canada, Australia, Japan, and Germany
to name a few). For some, these are our first children, for others, they are
two extra bundles of joy to add to the others. We are here to help.

Just
what are "Monoamniotic Twins"?

Fraternal vs.
Identical Twins
In order to understand what "monoamniotic twins" are, let's first
look at twins in general. There are two types: fraternal and identical.
Fraternal twins are created when two separate eggs are fertilized by two
separate sperm. While some fraternal twins look stunningly alike, they are
nevertheless the product of two separate fertilizations. Generally speaking,
fraternal twins are said, on average, to share about 50% of their genes - the
same as any other two siblings. Identical twins, however, are created when one
egg is fertilized by one sperm, and some time after fertilization, this single
egg miraculously splits, forming two distinct embryos with the exact same genes.
Identical twins always share 100% of their genes, and while most look very much
alike, it is not uncommon for them to have somewhat different appearances, and
occasionally very different appearance. Therefore, appearance alone cannot
differentiate between fraternal and identical twins. Identical twins are also
always the same sex. Since they share 100% of their genes, they would have to
be! No one knows exactly what makes the egg split. It appears to be random,
occurring approximately 1 in every 250 pregnancies. This statistic has held
true across cultural boundaries and time (unlike fraternal twins, which are on
a steep rise). Monoamniotic twins are always identical. So now let me
tell you more about why...

Splitting
eggs...When the egg splits
is an important fact. To understand why, you'll need to understand a little
about the biology of the forming embryo. One of the first things to form is the
yolk sac. To my surprise, when I looked this up, it seems that no one is
completely sure what it's for. The current assumption is that it exists to
nourish the forming embryo. The one important thing to know about the yolk sac,
though, is whether there are two yolk sacs or only one. I'll get back to this
in a minute. The placenta and chorionic sac begin to form probably about
the same time. After that, the amniotic sac forms. Imagine these three sacs as
three balloons surrounding the baby. (To be technically correct, the placenta
isn't really a "balloon" - but for the purposes of this example,
we'll think of it that way.) Now, if the egg splits before the placenta has
formed, each baby will have their own placenta, chorionic sac, and amniotic
sac. This is uncommon, but it is possible, and it is why having two placentas
doesn’t necessarily mean the babies are fraternal twins. If the egg splits
after the placenta has formed (within a few days after conception), then the
two babies will share a placenta and chorion, but will have their very own
amniotic sac. But if they split after the amniotic sac has begun to form (estimates
range between 7 to 9 days after conception), then both babies will have to
share an amniotic sac. This is what we mean when we say "Monoamniotic
Twins". Again, no one knows why the egg splits exactly when it splits
anymore than they understand why they split in the first place. Obstetricians
and Perinatologists will also sometimes refer to this in shorthand as
"MoMo twins" for Monochorionic and Monoamniotic.
Another acceptable term is Monoamnionic (with an "n" instead of a
"t"). All are correct, but the most common term is Monoamniotic (and
is also the namesake for our site). Other terms that we have heard used related
to this type of pregnancy are "mono amniotic twins", "One sack
twins", "One sac twins", "Twins in the same sac",
"no membrane", "monoamniotic membrane", “mono twins”,
"one septum". These are only a few of the phrases that my be tossed
around by the medical (and not so medical) communities. Please note that
monoamniotic triplets may form as well. We have had one couple with
monoamniotic triplets with us, and have had a handful of triplet pregnancies
with a momo pair.

Back to that yolk sac...
First of all, you have to have an ultrasound at a very early time to be able to
see a yolk sac. It disappears gradually as the babies develop. But more
importantly, there is some research that states that the number of yolk sacs
corresponds directly with the number of amniotic sacs. 2 Yolk sacs = 2 amniotic
sacs. There is a physical reason behind this – it’s not just a coincidence. So
if you have had an ultrasound early enough to be able to see yolk sacs, ask
your doctor how many there were. Most likely, if you saw two yolk sacs, you
have been misdiagnosed. This is not always true; however. Sometimes, a
misdiagnosis can result because the ultrasound machine being used is not of
sufficient resolution to be able to see both yolk sacs, even though they are
really there. And in the case of one member here, although they saw two yolk
sacs, she was later confirmed to be truly monoamniotic. Her doctors couldn't
explain how or why that happened, but it did. So it is not an absolute rule;
however, it is very likely that if you were able to see 2 yolk sacs, you do
have two amniotic sacs. It is at least reason to continue looking for a
membrane until and unless you have separate confirmation of the diagnosis. (See
the section below "Are they sure they're in the same sac?")

What does it
mean when they say I'm carrying Monoamniotic twins?This means that
both babies share the same living space. They don't just share their house,
they share a bedroom, bathroom, and playroom. While it is still possible even
for a singleton to become tangled in his or her own cord, monoamniotic twins
have to worry about becoming tangled in their sibling's cord, too. Cord
entanglement (also called "Cord Accidents") are the number one risk
in this type of pregnancy. However - to put this danger in perspective -
virtually all cases of monoamniotic twins will have tangled cords. (There are a
few very, very rare cases where it is found after birth that there was no
entanglement at all. But for the purposes of pregnancy management, it should be
assumed that they all will become tangled to some degree.) It appears
impossible for two babies to exist in the same sac without at least twisting
their cords. So simple entanglement is *not* a death sentence! In order for
entanglement to become dangerous, there must be cord compression. It is very
possible to have entanglement apparent as early as 10 weeks (and probably even
earlier), and still have both babies delivered safely at 34 weeks with no
complications. We have had several parents here who saw entanglement at their
initial diagnosis ultrasound. It is very likely that the majority of tangles
begin during the first trimester when there is so much extra room to move
around in. So even if you see tangles from the very start, that does not
necessarily mean that you will have serious or fatal cord compression before
you can safely deliver them. Nevertheless, as cord entanglement is the first
sign of possible problems, that is what Obstetricians and Perinatologists will
give the most amount of attention to. The weapons they have at their disposal
in this fight are ultrasound, doppler imaging (a way of seeing actual blood
flow through the cords), and fetal monitoring. With these tools, it becomes
easier to detect problems early, before they become insurmountable.

We wish we could tell you
that there was some kind of procedure that could be done to "fix"
this condition, but there's not. There is one medication (called Sulindac) that
reduces amniotic fluid volume in hopes that reduced fluid will also reduce
movements of the babies. However, it is very experimental. Preliminary studies
have shown good results; however, there are no long term studies on the side
effects of Sulindac on either the mother or the babies. If you would like to
consider this treatment, we urge you to discuss it with your perinatologist to
get a better idea of the potential risks and benefits. Other than Sulindac,
there are no "treatments" that actually try to prevent entanglement
or compression. The only "treatment" doctors can offer is delivery.
If they discover serious problems before 24-26 weeks (the point of viability
outside the womb), there's nothing that can be done. After that point, if they
discover life-threatening problems, they can deliver. However, the earlier
delivery occurs, the higher chance that they may suffer from the complications
of extreme prematurity.

While some cord accidents
are sudden, it appears that the majority of fatal cord accidents are
gradual. And the majority of those will show symptoms that can be
detected via high resolution ultrasound and/or fetal monitoring (i.e. Non
Stress Tests or NST's). That means if you are watching often enough, you
will probably see the signs of compression in enough time to do an emergency
delivery before it is too late. So as you can see, the key to management
of a monoamniotic pregnancy is monitoring. How much and how often is a question
that you will have to address with your perinatologist. Unfortunately, there is
no consensus of a "best" treatment plan in terms of the frequency of
monitoring. Generally speaking, more is better, up to and including 24/7
continuous monitoring. There has been a recent push to use continuous
monitoring, as some recent studies have shown not only higher success rates
with 24/7 monitoring, but also later deliveries than those monitored less
frequently. Nevertheless, there are a lot of details that must be considered
when making this decision, such as financial concerns, caring for other
children, or the sheer inconvenience of either traveling to the hospital
repeatedly for NST's, or the inconvenience of being hospitalized for an
extended period of time. So that decision is best made between you and your
perinatologist, weighing all the concerns.

One other thing that having
monoamniotic twins means is that you will deliver via c-section, prematurely.
How early is also a debatable matter. Some doctors advocate 32 weeks, others
34, and yet others 36. The idea is to balance the risks outside vs. the risks
inside. Once you get to 32 weeks, the scariest of the preemie problems are
usually past. At 34, all but minor preemie problems should be past. And at 36,
they are almost considered full term. However, there is evidence that carrying
past 36 weeks increases the risk of fetal death. So, given the fact that there
are almost no prematurity risks at 36 weeks, there are very few reasons to
carry beyond that point, and a LOT of reasons not to. Nevertheless, you have to
weigh the risks of prematurity at each of these milestones with the risks of
staying in utero - which are considerable. The longer they stay in, the more
chances there are for fatal cord accidents.

As for delivering by
c-section, that is very important. If there is entanglement, there is the
possibility that neither baby could be born vaginally because they are
"tied" together so closely. Even if there is only minimal tangling,
the risks of cord prolapse (where the cord of the second baby is
"born" at the same time as the first baby, thus compressing the cord
and possibly causing irreparable damage to the second baby) are too high to
dismiss. Admittedly, there have been monoamniotic twins born vaginally and at
term who were completely healthy. There have even been a few cases reported in
the literature of safely delivered monoamniotic twins, encouraging others to
attempt it themselves. We've also had a handful of parents find us years after
the birth of their children, who were shocked when they realized all the risks
they had faced without knowing. After all, this condition was impossible
to even diagnose before ultrasound came along, and yet there were still healthy
babies born. However, the risks of both carrying to term, and of attempting a
vaginal delivery are so high that few doctors are willing to risk their
patients on them. And anyone whose doctor encourages an attempted vaginal
delivery should think very carefully about the risks and whether they are
willing to take them for the minimal benefit of a potential vaginal delivery,
which could easily end up being an emergency cesarean delivery.

Another thing that you
should expect from this type of pregnancy is a referral to a perinatologist.
That word has been tossed around several times on this page, but what it means
is a specialist in high-risk pregnancies. The newer name is
"Maternal-Fetal Medicine Specialists” or MFM’s. No matter what you call
them, they have more experience and knowledge of how to deal with this type of high-risk
pregnancy. Even if your obstetrician or family physician is comfortable taking
care of you, you will still want at least a consult from a specialist. After
all, this condition is so rare, it would be unrealistic to expect every OB to
have studied it and to know off-hand what a proper management protocol is. Most
OB's will give you this referral immediately, but others may need to be
"prompted" by a request. Some OB's will willingly do research on
their own to learn more about it; however, as long as there is a specialist
available, one should be involved. Some perinatologists will take over complete
care of your pregnancy, while others will simply consult with your OB through
the pregnancy, advising of what to do at each stage. Either way, you will have
the benefit of more experience and knowledge, and you deserve that.

So lastly, you'll want to
mentally prepare yourself for not only a complicated high-risk pregnancy, but
also a premature c-section delivery, and very probably a NICU stay as well. We
know what an enormous burden that is, emotionally. Losing the hopes for a
"normal" pregnancy and delivery is a true loss. All of us have been
in the same place you are, and we know how hard it is. That's one of the
reasons we're here to help!

Are they sure
they're in the same sac?What may be the
best news of all is that the amniotic membrane can be very thin. So thin,
that's it's extremely hard to see on an ultrasound. So misdiagnoses are common.
If the diagnosis was made before 8 weeks, it is definitely not certain. It is
simply not possible to get a reliable determination of whether a membrane is
present or not before 8 weeks. After that point, there appears to be a window
around 10 to 12 weeks where the membrane is easier to see. Others note a window
at 16 to 20 weeks. So if you are diagnosed before that time, you may want to
ask for a repeat ultrasound during one or both of these timeframes. However,
what appears to be far more important in accurately determining whether a
membrane is present is the use of a high resolution ultrasound machine. Many
times, and OB will refer a patient to a specialist, convinced the babies are
monoamniotic. But often with the aid of a higher resolution machine, and years
of high-risk obstetric experience, the specialist is able to find a membrane.

Some doctors are reluctant
to make a referral to a perinatologist so early in a pregnancy, thinking that
there is nothing the specialist can do that the regular doctor cannot. And with
the exception of a more accurate diagnosis, that is mostly correct. However,
waiting until 20 weeks before a referral means that you may have missed your
best chance at finding a membrane. It is worthwhile to press your doctor for an
early referral if for no other reason than to get a more accurate confirmation
ultrasound.

Many of us do not find out
that there are even twins, much less whether there's a membrane or not until
much later. In those cases, there is still a good chance that the membrane was
just hidden. Several people in our group found out at fairly late ages (28
weeks in some cases) that they were misdiagnosed. So unless you've had a
definitive absolute diagnosis (see below for some of the ways that can be
done), there still may be hope for a misdiagnosis.

Some of the tests they use
to determine if the babies are truly in one sac are done through amniocentesis.
If the doctor will be doing an amnio (for any reason), it is likely that during
the amnio they will perform another test to try to find a membrane. One is
called "the bubble test", the other "the dye test." During a
"bubble test", they will insert a small bubble of air into the
amniotic cavity next to one baby. Then they will roll the mother over while
still doing an ultrasound and see if the bubble travels to the other side (next
to the other baby) unhindered. If it does, they will assume there is no
membrane. The "dye test" involves injecting dye into the amniotic
fluid next to one baby, then withdrawing fluid next to the other baby. If the
fluid next to the second baby is also dyed, then they probably share a sac. Probably?
In rare instances a membrane may be so thin that the babies have punctured it
thus the dye (or bubble) can still get across. One member had the equivalent of
a "volleyball" net membrane - poked full of holes. Sometimes these
"volleyball nets" are sufficient to keep the babies from becoming
entangled; however, it is best to assume that it will not and act accordingly.

One other diagnostic
criteria they use to determine if the babies are truly in one sac is the
presence of tangles. If they can clearly see tangles in their cords, then that
pretty much conclusively determines that there is only one sac. Even if there
is a "volleyball net" membrane, that's irrelevant - obviously it
didn't keep them from becoming entangled, so it is safest to consider them
monoamniotic and proceed with managing the pregnancy as that way.

What about TTTS?
Twin to Twin Transfusion Syndrome is possible with monoamniotic twins. Until
recently, it was thought that it was less common with monoamniotic twins than
with monochorionic, diamniotic twins. However, some recent research states that
the incidence of TTTS is virtually the same in both groups. Nevertheless, it
may be more difficult to diagnose when the babies share a sac. One of the key
indicators they use in diagnosing TTTS is the amount of fluid in the two sacs -
if one has a whole lot, and the other has very little, that suggests TTTS.
However, with only one sac, that is impossible to determine. So the main
technique they will use to diagnose TTTS in a monoamniotic pregnancy is size
discrepancy. Basically - whether one baby is of drastically different size than
the other. Another important diagnostic clue is the condition of the bladder.
In TTTS, one twin will have a very large bladder, but the other will have an
almost invisible bladder. More information is available about TTTS from such
groups as the TTTS Foundation and Twinhope. You will find information regarding
what TTTS is, how it is diagnosed, and how it can be treated there. Links to
these groups are on our Home Page.

Where do I go
from here?
I hope that you will find a lot of useful information on this site, but I think
the most helpful part of this group is its members. We have Bulletin Board
Forums here that you can access easily. Don't hesitate to "jump in" and
ask questions. We even have a "Story Board" where you can read
"real life" stories from other parents who have been, or are still
going through a monoamniotic pregnancy. Please feel free to contact us or to
explore our site further. We try to focus on the positive, and the things that
you actively can do to help manage your pregnancy. While there is a lot that
you can't do, we think it helps to focus on those things that you can. We have
been accused of offering "false hope" to parents because even after
doing everything right, they still lost their babies. Sadly, we have to admit
that that does happen a lot more often than anyone likes to admit. We don't
want to minimize the risks. However, that does not mean there is not still
reason to hope. At the worst, there is at least a 50% chance of survival, and
most likely it's much higher than that when the pregnancy is managed well. And
while no one can quantify the benefits of positive thinking, it's easy to see
that negative thinking doesn't help either. So please, don't take our positive
attitude as one of dismissing the risks. It is simply a decision to focus on
the positives rather than the negatives, and to give hope to parents when they
may think there is no hope left. We hope you will join our group and share your
experiences with us, and help other parents worldwide to deal with this
complicated and heart-wrenching pregnancy.